Through the past 90 years, Kiwanis has witnessed many miracles that have saved lives at this Indianapolis children’s hospital. The Currys’ is one such story.
Story by Kasey Jackson
Photos by Kasey Jackson, Curtis Billue and Tom Russo/Greenfield Daily Reporter
[FROM THE ARCHIVES]
The inception of the 12:34 dance party says a lot about the Curry family’s positivity and perseverance. In their darkest days, they always found the silver lining. They spent time together. They laughed together. They prayed together. And when the clock struck 12:34, they danced together.
Through it all, they were never alone. Nurses and doctors danced with them. People around the world prayed with and for them and followed along for updates on social media. And that spiritual backing and love could be felt all the way into Katie Grace Curry’s room at Riley Hospital for Children at Indiana University Health in Indianapolis, Indiana. She was blessed beyond measure.
But she was also sick. Very, very sick.
It all started around May 2013. Katie’s third-grade year was coming to a close. Like other children her age, she should’ve been excited and making plans for summer break. Instead, she wasn’t feeling so great. She had started to feel a lump in her throat. Soon, that “lump” was making her gag, oftentimes causing her to vomit.
“We thought at one point she was having food allergies,” says her father, Danny. “We even restricted her diet to try to help with all of that. There was really a lot of ‘Oh, it’s something digestive. We’re gonna figure it out.’ We kinda lived with it for a little while. Then she was getting lethargic and a number of things had us concerned. Really, what prompted the discovery was pursuing this digestive thing—thinking it was food-related. Then they ran some tests, and that’s when they began to discover things that weren’t anywhere on our radar screen. We had no way of processing this. We were like, ‘She has food allergies, right?’ I would say we processed it in little bites along the way. It was overwhelming at first.”
Katie and her mom, Jen, spent hours at Riley, going through a battery of tests while Danny, who is a minister, was at a church conference in Nebraska. Jen updated him regularly throughout the process.
“I get a phone call that says, ‘They want to admit us to the hospital,’” Danny recalls. “And I remember my response was, ‘They want to admit us for food allergies? I didn’t know you needed to go to the hospital for food allergies.’”
There were all sorts of specialists. Numerous tests. Blood work. Doctors were sure something was wrong, just not quite sure what. Danny remembers it as “chaotic, but for me, I was a thousand miles away. So that was hard.”
And then, the doctors had answers. It turns out that lump Katie was feeling in her throat was actually her heart. One of Katie’s kidneys had never fully developed and the other was giving out. And since kidneys help regulate blood pressure, Katie’s heart had become enlarged from working so hard. And she could feel it.
“As they began to say words like ‘kidney failure’ and ‘heart failure,’ which was a lot to hear about your 9-year-old, it was shocking,” says Danny. “I remember where I was standing. I was at the University of Nebraska for a conference. I was standing outside of their auditorium. There was a bench right there and I felt my legs buckle a little bit and I sat down and kinda just melted, emotionally, a little bit.”
Katie initially spent two weeks at Riley to get her blood pressure back to a safe and normal range. But this was just the beginning of her journey. In September 2013, Katie would have her under-developed kidney removed and by June 2014, Katie was becoming so ill from the toxins in her body that the search for a kidney donor began in earnest.
Her mother was tested first, but it was determined she was not a good match. Dad was next.
“I remember those days of waiting to hear about the results, to see if it was a go or not,” Danny says. “And, it was. …”
At this point, Danny’s voice trails off. Tears well up in his eyes. Katie, who is sitting next to him, giggles as she looks at her dad. He looks at her and smiles through his tears.
“It was awesome getting that call.”
Letting kids be kids
All along the way, a team known as Child Life specialists talked with Katie to explain to her exactly what was happening. They used medical play to show her what it was like to have a kidney removed and a new one put in. They had fun in the Child Life Zone, a new area within Riley that houses games, a working TV studio and even a display ambulance that opens in the back for exploration and explanation. The entire zone is bright, colorful and, most of all, fun. And there’s a different Child Life specialist for each step of the journey—so Katie made many new friends.
“I remember Maggie (Kirles) told me what it was going to be like,” Katie says about her surgery. “She gave me a doll that we did surgery on. First, we cleaned it. Then we cut her open. Then we took a packing peanut and stuck it in there for the kidney. (Katie named her new kidney and her doll’s new kidney “Kinedy,” which she “spelled to look a little like kidney.”) Then we sewed it back together. Then we brought it back to the room with a little bed and IV pole.”
The experience wouldn’t have gone as smoothly as it did without the Child Life specialists, Danny says.
“You have doctors who can be intimidating, and the nurses do a great job of trying to translate that there’s this other level of care. They’re special friends who come in and say, “Let’s do something fun today.’ For the kids, it doesn’t feel like they’re in a stressful situation. They do a good job of keeping it fun and light.”
Maggie Kirles is the Child Life specialist who worked with Katie to prep her for her nephrectomy, the surgery she had to remove the bad kidney. She’s also the one who did the “surgery” on the doll with Katie.
“We have a mantra in Child Life,” Maggie says. “We say: ‘Kids need more than just medicine to get well.’ And we are that extra part of their care. We are there helping to normalize the environment. It’s kind of like coming in to a new world with a new language. Lots of big terms. So we help them understand. Make the environment fun. Give them things they know how to do. A kid’s job is to play. So we’re here to help make sure they can still do their job while they’re in the hospital.”
A long partnership
And here to make sure Child Life specialists have the support they need is the Indiana District of Kiwanis. In 2013, the district continued its ongoing support of Riley with a US$450,000 pledge to support the Child Life program. Without this pledge, the program would have suffered loss of staff and resources.
Kiwanian Denny Yoder is chairman of the Riley K.I.D.S. committee.
“Child Life is a super project,” he says. “The people who work in Child Life make it seem like all they do is work with kids, but the knowledge they have about each and every different type of surgery and how they can take that down to, say, a 5-year-old and make that 5-year-old feel like they can’t wait to get into surgery is phenomenal. And so it may appear they’re just playing with kids, but their knowledge and background and what they’re actually doing—making those kids feel comfortable—is just amazing.”
Danny and Katie went in for their surgeries on December 15, 2014. Danny went in first, at Indiana University Hospital. Once his kidney was removed, it was rushed through several walkways to Katie, who was waiting in a Riley operating room next door.
The procedure was a success. When Katie went in to have her operation, her kidney filtration rate had dropped to a life-threatening nine. (A healthy filtration number—which tells how much blood is circulating through the kidney—is above 100.) On December 26, Danny posted to Twitter that Katie’s level had hit 109.
And they were going home.
“From a parent of a Riley kid,” says Danny, “what people do in their generosity to support a place like this … I think sometimes when people give they give to a hospital, they see a structure, they think, ‘Oh, there are doctors and nurses.’ But when you’re giving to support a place like this, behind all of those dollars and behind every one of those numbers is a name. And a family. And a story. So, what you do matters. A lot. We’re certainly grateful.”
What is Child Life?
The Riley Child Life Program at IU Health seeks to minimize the stress and anxiety children often experience by using therapeutic and art activities that address patient and families’ societal, emotional and educational needs during hospitalization.
Child Life supports patients and families in the following ways:
- Activities at the bedside
- Activities presented in special Child Life playrooms on each floor
- Pre-surgery programs
- Comfort and distraction during painful procedures
- Educational approach with patients
- Special art and music programs
- Holiday celebrations/performances, seasonal/event celebrations
Information courtesy of Riley Children’s Foundation, RileyKids.org
Indiana District Kiwanis and Riley Hospital for Children: A timeline
1919 Indiana District Kiwanians begin fundraising for the hospital.
1924 Riley Hospital for Children opens its doors. 1,200 children were treated in the first year.
1926 Indiana District Kiwanis raises US$150,000 for the Kiwanis K-Wing to be built. The original cornerstone can still be seen in the Kiwanis courtyard.
1958 Kiwanis Diagnostic & Outpatient Center opens.
1975 Kiwanis K-Wing remodeled.
1991 Indiana Kiwanis clubs make US$1 million pledge.
2004 Kiwanis’ first MICU (Mobile Intensive Care Unit) released to fleet of ambulances.
2009 Kiwanis pledges US$1 million for “Path to a Cure” for diabetes research.
2013 Kiwanis pledges US$450,000 to support Child Life program.
Information courtesy of Riley Children’s Foundation, RileyKids.org
Kiwanis projects at Riley Hospital for Children
- Kiwanis K-Wing
- Kiwanis courtyard
- Kiwanis helipad
- Kiwanis elevator
- Kiwanis torch
- Kiwanis Red Wagon Corral
- Kiwanis MICU
- Kiwanis helicopter
- Kiwanis Parent Comfort Cart
- Kiwanis Reach Out Program
- Kiwanis Reach Out and Read
- Kiwanis Child Injury Prevention
- Kiwanis Adapted Bike Safety
- Kiwanis Magic Castle Cart
- Kiwanis Jump Kids Jump Movement
- Child Life program
- Kiwanis trauma dolls
- Kiwanis neck pillows
- Kiwanis blankets
Information courtesy of Riley Children’s Foundation, RileyKids.org
This story originally appeared in the June/July 2015 issue of Kiwanis magazine.
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